#fear no more

I live in fear…fear that my next move will be painful….fear that I might push my body to far…fear that I’ll be down for the count…fear of another flare…fear I might not be able to move tomorrow…fear of the future…and you know what I’m tired of it…so today I ran…it started off as a walk and as I walked I felt like running..so I ran….not to fast not too hard..but it was a run and it felt great…this illness has taken away so much of my life..and I’m over it…It felt great to live in the moment…not over think my moves..to not be in fear of what the moves would do to my body…to not over think my actions…that’s how I felt and I won’t allow myself to regret it…there’s a scripture that says “fear not those who kill the body,but cannot destroy  the soul”….chronic illness might damage my body…but I refuse to let it take away my soul…my inner drive…my spirit…my life…I will fear no more..

Those are my thoughts for today…the blog will be down for a spell as it is being migrated to another platform…so comments and updates will be turned off for the moment…Happy Tuesday and Wednesday….#stay triumphant

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#stuck in neutral

another Monday….another flare up…overbearing…fatigue…weakness…muscle spasms, nausea…I think that just about sums up my day….check down the list….this weekend was a bust and Saturday through today seemed to be one long omnipresent day…on a happier note my order of bound books finally arrived….these are the copies that I can give to friends and supporters….the paper back copies should be on the Amazon marketplace by the end of the week…HOORAY!…it all seems rather anticlimactic….here I have been anxiously awaiting the final production of my book…so excited to be redesigning the blog and now that everything is shaping up just as I had envisioned….I feel tired, listless, weakened…and kind of empty….like a car stuck in the gear….the motor is running, the engine is revving up, but the car just sits there…stuck like a bump on a log…the wheels spinning and spinning but the car is stuck in neutral….yes…. I guess that’s how I feel…I perpetually feel like I am stuck in neutral…always revving up my engine but never seem to be getting anywhere…just stuck in the same gear….wheels spinning…. going no where…..should I give up?….I guess I will stop my rambling and stop feeling sorry for myself…..positivity really is the best remedy…I hope everyone in the blogosphere had a marvelous Monday….keep positive no matter what life throws at you…remember it’s not a failure unless you quit….and never stop revving up your engine…good night #stay triumphant

#give it to God

2 Corinthians 4:7-10: However, we have this treasure in earthen vessels, that the power beyond what is normal may be God’s and not that out of ourselves.8We are pressed in every way, but not cramped beyond movement; we are perplexed, but not absolutely with no way out;9we are persecuted, but not left in the lurch; we are thrown down, but not destroyed.10Always we endure everywhere in our body the death‐dealing treatment given to Jesus, that the life of Jesus may also be made manifest in our body.

this scripture basically sums up pretty well all of my thoughts and feelings tonight…I feel like I could write a book…just on what I am feeling tonight…..I just got off the phone with my psychologist who was returning a voice mail that I left with him earlier today, after I left his office…the opposite of love is not hate but indifference..and indifference is basically what I felt when I left him today…before today, I truly believed that he was different from all the others…others as in, other DOCTORS…he was the only person who I felt free, free of judgment…I felt he truly understood me in every way and had the empathy that I so desperately needed from another human….well he was until today…let’s just say in so many words in my voicemail I left him, I told him point blank.. “you are just like all the others…you smile unassumingly, nod your head and say YES YES I get it….I understand….but you are not TRULY listening to me at all…because if you were REALLY, TRULY, HONESTLY listening to me…you wouldn’t say the things you are sayingbut you do not get me at all”…you have no idea what I live with every single second”…you scribble nothings on your pad and analyze me…and know not the first thing about me or my condition….

the emotional scars and wounds of these illnesses are in my opinion, greater than the pain….pain pills can numb the pain sensations for awhile…. but the emotional boulders, lonliness, and isolation we experience cannot be medicated away…and even though you might have family around you….the silence can be so awfully loud…. you can still feel alone and isolated with nowhere to turn and not feel judged, misunderstood, or like you are a burden to the world…

I am learning to accept that, for some things… it is beyond human comprehension and capacity to understand… and for these things I put my weight on God…he understands and knows the person I am…God gets my pain and he sees my suffering……the human mind is limited and I cannot become resentful of people for what they have no capacity of doing…so without fear, or shame, or anger…I have truly given all of this to GOD..REALLY and TRULY…because I do not have the power and strength to deal with it anymore…at this point all of it is in GOD’s hands and I will worry no more…I FEEL FREE….each of you will come to this place…at some point or another we each realize that all of this is much bigger than ourselves…there is a larger picture…horizons beyond the scope of human intelligence…I am simply on the ride…I am not in control and I am OK..nothing even matters…SO please, if you haven’t already… give it to God…release the weight, emotional scars, and baggage that bind you and set yourself free…and may his power be with you…AMEN…that is all I have tonight..this goes out to you, and you, and you….you know who you are…have a goodnight…and as always #stay triumphant

#it was only a splinter

last night I played the part of a surgeon and with my small nail manicure kit went to work on a tiny splinter lodged in the side of my thumb…for weeks I haven’t been able to figure out the source of my discomfort… my thumb had began to swell and was very sore…upon closer inspection, I realized that somehow a small piece of something had become lodged in the side of my thumb…several minutes later and after a lot of clipping, digging, biting, and sweating…my novice surgical procedure was complete...what a relief…during this whole ordeal I couldn’t help but think about the irony and metaphorical undertones this small splinter represented…

sometimes the tiniest imbalances and imperfections in our bodies, create major systemic problems…so often our doctors and specialists perform panel after panel of blood work, tests, and x-rays…they examine, prod, probe, and on the surface its seems as if nothing is wrong… they tell us our results are normal..they tell us our numbers are slightly off, but not enough to make a big difference, not enough to cause any problems…they tell us the pain and discomfort is all in our heads….How many times have you heard these words??…it can be a frustrating, maddening, conundrum of an experience because as patients we know how we feel and we know something, whatever it is, is off...

my point is that small seemingly insignificant disruptions in our bodies can create huge problems..hence the reason why many of us have allergies, are lactose intolerant, Type II Diabetics, dyslexia, depression, auto immune issues… the list is endless…we know that with one small DNA abnormality or extra chromosome an individual can be born with all sorts of life altering illnesses….

as a chronic illness sufferer, somewhere down the line…a small insidious “splinter”took root somewhere in my body and has caused life altering and detrimental consequences…even though this splinter doesn’t show up on an MRI, CT scan, or blood panel…I know that something is wrong, something is off because I am not normal, (whatever that means)…just like that small splinter in the side of my thumb…I will continue to dig away and find the answers to how my body, mind, and soul got to this place…what is the small culprit responsible for all my ailments….this is now my job…really our job as people with chronic disease to find the answers…sometimes we are tired and can’t bear the weight or the pain…but bit by bit we chip away to find answers..to research…and to find a doctor who will listen to us … a doctor who will take a step back…examine more closely those numbers and look at those small things that are just a little bit off….and are willing to help us to uncover what lies beneath…

that’s all I have tonight folks….sleep well…praying for peace, rest, and happiness to everyone out there suffering in silence…keep the faith…and as always….#stay triumphant

 

 

#foot in mouth syndrome

well folks..I am finally back in Nashville…it was nice to get away but there is no place like the place you call home…I am always dreading plane rides…they drag out into long arduous, exhausting all day ordeals…and with all the chronic issues I deal with… I am always thinking 5 steps ahead and how to prepare my mind and body for the agony that lies ahead…today’s return flight was no different…I actually am doing better with relaxing and accepting all that goes into a flight…. but my body is screaming in agony, pain, fire, fatigue, and just check all of the above…

but enough about that…what I really wanted to make this post about was an inciteful and thought provoking post that I read over at Decimawho.. who is from London and also lives the journey of chronic illness, Lyme Disease to be exact…this post entitled All in the Same Boat…really struck a chord with me…in a nutshell the post vents about the frustrations over friends, family, and other pain sufferers who make comments and say things like: look on the bright side, or we are all in the same boat, which on the surface seem small and are intended to help…. but actually do the opposite and make you feel more alone, more isolated, worse than you already feel…and for me downright piss you off…

no one person with a chronic illness is the same as the next, if you have met one person with a chronic disease… we are each unique and although we may share an empathic bond of sorts… you have met just that one person, our abilities and what we can do varies even with the same disease and our experiences are just that, our experiences….not to be shared, compared, or put up against another person…this post hit home for me because in their ignorance my family often makes small insidious comments that seem innocent on the outside… but for me take roots deep into my psyche and only make me feel worse about myself… for just today as I sat in the airport texting my family about my progress during the trip, I told one person that I have touched down safe…and that I was deeply fatigued and exhausted…now this comment was just to make conversation…I wasn’t complaining or trying to garner sympathy or even a reply… it was just a status update, nothing more, nothing less..the reply I got back was: You will be ok…. now I know my mood is often on a roller coaster and some days I cry at the drop of a hat and I am very sensitive to the world in general…but how does that comment read to you?… for me, it just struck a raw nerve…did the person really have to reply that way…my initial comment in no way implied that I was not ok, and of course, I know I will be ok

I live these diseases every waking second of everyday…fatigue and exhaustion are a part of my existence, just like breathing or blinking, I feel fatigue all the time…the comment was unnecessary and I replied in a acerbic way to let the person know that it was unnecessary….and not at all helpful…frankly, I am tired of letting these small, insidious types of comments slide…sick of making nice… grinning and bearing it…only to feel anger and heat welling up inside, making my body pulsate with pain even  worse than it already does…I call this foot in mouth syndrome, where people are trying to be kind or helpful or whatever they are trying to do…but the comments don’t go over well and do more harm than good…

well like Decimawho, I am taking no more… I am taking a stand to let people know that sometimes saying nothing at all is best…less is best… you do not always need to say anything and if you do, try to think about your comment before you utter it from your mouth….since once it comes out…there is no turning back…the damage is done.. and unlike a slap in the face…the sting of poor words spoken at the wrong time, does not go away….it can linger, suffocate, and hurt for days, weeks, months even…

thanks for reading and letting me vent, I know this is a long post but I have wanted to get it out all day, since I read Decimowho’s post and then fate made me experience just what they were expressing in the blog post….please do stop by Decimawho’s blog and follow their journey…we are all connected in this chronic world and learn from each other..how to deal one day at a time… have a blessed night….#stay triumphant

#physician insensitivity

click the word video to be taken to the video…for some reason WP won’t let me embed video from HLN.

I found this video over at Elana’s Pantry in her post about leaky gut, celiac disease and the ignorance and insensitivity that doctors have regarding the disease. I cringed upon watching this video as Jennifer’s televised experience mirrors that of many I myself and others have on a  daily basis when talking to their specialists about invisible illnesses…often doctors are insensitive, disrespectful, condescending, mean spirited, and just plain rude…this is not ok? televised interviews like this held by Dr. Drew only add to the perpetuation of misinformation and ignorance that most people have against those battling with such illnesses…doctors like Dr. Drew need to do a better job at  getting educated and having compassion, especially those with the visibility and platform that he has…doctors do not know everything and it is ok to admit that…what is not OK,  is to degrade and minimize the experience of a patient because you lack knowledge..that is called discrimination ….where can I sign up to start a petition to complain about this interview?…

#midnight venting

currently visting with my family in NY….I have been here for two weeks so far with another week to go….why did I plan to stay so long….. I am ready to go….I was told by a family member that I am a mean person…I know I have a lot to work on..it is these comments that fuel my anxiety, and like I am currently doing, I obsess over them and feel worse…these chronic physical and mental illnesses are difficult to control and sometimes my mood swings and lack of affect are not intentional..I also don’t want to use my “disorder” as a crux to be an intentionally mean and nasty person, things come out fast and harsh and I don’t mean for them to… they just do, I am not becoming a mean person am I? I would hate to think so….add my personality to the list of things that have been turned upside down by these monsters… I just don’t know..not feeling very triumphant right now..